Pulmonary Fibrosis and Hydroxychloroquine shortage.

[Little-Lung-Lulu]

I was diagnosed with PF in 2004 and subsequently got Pulmonary Hypertension as well. A year ago I was prescribed Hydroxychloroquine Sulfate by the Brompton and have found I have had some benefit from this medication. I just had a phone call from the company that delivers my prescription to advise that Hydroxychlorquine is no longer available and arrangements must be made to have different medication prescribed. Has anyone else had this type of communication? There are people who suffer from lupus and arthritis who take this medication as well as those suffering from malaria. What on earth is going on? I have sent an email to The Royal Brompton and am waiting to hear from them.

[sassy59]

Sorry to hear that LLL. I must ask my daughter in law because she has systemic lupus and takes that medication I believe.

Hope you get a reply from the Brompton. Xxx

[tillie]

I have systemic lupus so have to take it. Script on order, not heard of any problem. Hopefully you get it all sorted soon.

[Suzie42]

That is simply disgraceful, has it all gone to treat covid patients. I hope this is a mistake, let us know what the Brompton say. Take care

[HungryHufflepuff]

My mum has that and has had difficulty getting it at times.

[Alberta56]

That really is not on. Hope this can be sorted without stressing you too much.

[Patk1]

Oh no.is it eorth ringing round chemists to see if they have any?? I hope yr able to get some.maybe worth doing a search online to see if its a manufacturing or supply prob.one of my tablets had to be changed a few mths ago as they stopped manufacturing it.i was lucky as there was an alternative.i did read,a few mths ago,that pharmacies and their suppliers,were advised by govt to stockpile some medications,including inhalers,as they anticipate some shortages due to brexit x

[Little-Lung-Lulu in reply to Patk1]

Hello Patk1 and everyone else who kindly replied to my question. I received a call from the ILD nurse at the Brompton who has spoken to the distributors. It seems as though they are trying to get a generic form of the Hydroxychloroquine Sulfate instead. They will get back to me. I have heard that some people are unable to take the generic form of this medication. Waiting in anticipation, but not holding my breath!!!😊 xx

[happytulip in reply to Little-Lung-Lulu]

Some people like me don't can't seem to absorb or respond to the Zentevia brand and only do well with the Bristol Brand/Quinoric Brand in the purple box. And others seem to only be able to tolerate Zentevia brand and the Bristol/Quinoric Brand upsets their stomach. It's a bit of a "find the one that suits you game." But if your symptoms worsen after taking a new type of HCQ don't discount the possibility that it could be the change in medication brand.

Mine was switched in July and I landed up in hospital for 6 weeks. I never dreamt that it could be due to a medication brand switch but it was. All sorted for now though.

[Little-Lung-Lulu in reply to happytulip]

I am so pleased you have given me this information. I will be extra careful when and if I get the generic HCQ. The type I am taking at the moment is Accord film coated. I have to take it first thing in the morning away from any other medication with a plain yoghurt, watered down, so that it is like a thick milk shake. Otherwise, I have the most awful indigestion!

[happytulip in reply to Little-Lung-Lulu]

That interesting.Most people have to take it on a full stomach after a good meal otherwise it can cause GI problems. I always have it after porridge for breakfast and after my evening meal.

Have you tried taking it after food?

[Little-Lung-Lulu in reply to happytulip]

Yes. It has been a bit of trial and error in getting it right. I tried after breakfast when taking my other medication. Not good. Then I tried taking HCQ after breakfast without my steroids etc. Remember I cant take my gastric reflux medication (Lansoprazole) until at least two hours after taking HCQ, so have to space that as well. I still had very bad indigestion even though I had a good breakfast. The only thing that has worked so far is the thick plain yoghurt drink.

Sorry to hear about your time in hospital. Hope you have fully recovered.

[happytulip in reply to Little-Lung-Lulu]

Thank you. Its ups and downs with my condition as I'm sure it is with yours.Interestingly we are on some of the same medication.

I'm on omeprazole instead of lansoprazole, steroids and HCQ as well as many others.

I was having problems with reflux and after extensively quizzing a pharmacist, Rheumatologist, GP and my own knowledge (15 years in Emergency Medicine), I was told that it's ok to take my PPI (omeprazole) half an hour before food and all my other drugs. However you must do what is right for you.

I'm only on this site to gain information for my father, recently diagnosed with COPD and in my experience it's always useful to ask people with the condition for their shared experiences.

It's worth mentioning that I am on gastro-resistant steroids. Without them my reflux would be worse.

I hope you manage to source your medication with ease and I hope it suits you. It's a real problem taking so many medications.

Good luck.

[Little-Lung-Lulu in reply to happytulip]

Yes, you are absolutely right when you say we have our ups and downs. I am still puzzled why I was prescribed the HCQ. It seems to have lessened the inflammation in the lung area. I really struggled in the beginning and also had a skin reaction. a few dry itchy patches on my back and very burning eyes. I reduced the dosage slightly for a while and went to the optician who prescribed Hycosan Extra. Nothing wrong with eyes except very dry. I went on high dose of Marine Collagen which helped the skin I am still taking it. I know it sounds weird to treat myself, but I did tell the lung Consultant when I went to her. I got the Fibrosis, which is life shortening, by repeatedly being prescribed an antibiotic for urinary tract infection. The anti-biotic is Nitrofurantion. I am sure it will all sort itself out in the end. Thanks for all the advise and info. much appreciated.

☺️xx

[happytulip in reply to Little-Lung-Lulu]

I worry about pulmonary fibrosis as I'm on long term prophylactic nitrofurantoin. It's a big concern of mine.

[Little-Lung-Lulu in reply to happytulip]

I know that the nitrofurantoin is still prescribed quite widely, but all medications have side effects. I have come across about four other people who have been affected by taking this antibiotic. Like penicillin, most people are not allergic to it. Perhaps if I had HCQ in the early stages of the fibrosis it might have slowed down. Who knows? Everyone is so different. I am on oxygen 24/7 now. If you are concerned get your doctor or consultant to keep an eye on your lungs. You owe it to yourself and your Dad. Take care. 😊

[Patk1]

I hope its soon sorted 4u xx

[happytulip]

Hi, I have lupus and can assure you that there are absolutely no shortages of HCQ in the UK. I know this because LUPUS UK have been updating up on the LUPUS UK page on HU.

I did struggle recently to get the brand that suits me best but this was easily rectified by switching to a different pharmacy.

Most people with lupus take 400mg of HCQ a day and there have been no reports of people being unable to get any.

I hope that helps?

[Little-Lung-Lulu in reply to happytulip]

That is good to know. I wouldn't want anyone, no matter what illness they had, to have to suffer because of a shortage of their medication. Thanks for your reply. It has put my mind to rest a bit.

[Daisychains01]

I'll tell you what was going on... They removed it from the market because it helped COVID! But they told us it didn't. BUT, look at the literature, even in the Lancet, HCQ does in fact, prevent COVID from getting worse. Imagine how many lives would have been saved... They also removed NAC from many markets because that too could help some people.